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Gluten Free For A Few Days And Not Feeling Great


xxkristin

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xxkristin Apprentice

I was diagnosed with celiac disease a couple days ago and since then I've been eating gluten free, well to my knowledge at least. The past 2 days, I've been hungry constantly. Even after eating a meal, I'll still be hungry. And I get REALLY hungry and have stomach pains sometimes. I also feel a bit weak at times and nauseous, especially when I'm hungry. Is this normal after you cut out gluten? And if so, how long does it usually take to go away? I don't really like feeling hungry and nauseous all the time.


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eatmeat4good Enthusiast

It is very normal. Many people have the extreme hunger and it is like your body is trying to make up for the malnutrition. I don't know how long it lasts, but mine took a few weeks to settle down. Hope you feel better soon. For now, eat as much as you like and can tolerate. Mostly whole foods, not packaged foods. The healing will take a while, but it should get easier. Welcome!

Strawberry-Jam Enthusiast

Definitely normal! I wasn't experiencing it as badly as you did, but after going gluten-free I started getting hungry many times a day and my stomach would actually GROWL. This was a huge step forward for me, since my primary symptoms were never feeling truly hungry, since my stomach emptied so slowly of undigested gluten, or being bloated/full alla time with acid reflux no matter how little I ate.

It should settle down after a while. For now, eat what you can, and make sure you get enough fat and protein, which should help keep you fuller longer.

Brigit Apprentice

Hi,

I've only been gluten free for 3 weeks. And they have been rather rough. Some days, I've been incredibly tired and very sore, and also like you mentioned; nauseous and hungry. But in between those days I've had glimpses of what it's going to feel like to be better, to wake up with no tingling in my hands and have no dizziness during the day. And that's what you need to remind yourself about.

We need to put some hard work in now, emotionally and mentally to help our bodies through a difficult time. You're body is going through change, so it's not going to be easy, but it is going to be worth it.

And yes, eat lots of what you can. Fresh fruit and veggies. Nice fish and meat, nuts and seeds. There are quite a few lovely treats to snack on.

Stick it out, I've been told that you'll start feeling better around 2 or 4 months, that's not to far away. :)

T.H. Community Regular

Hungry all the time - yeah, not uncommon symptom. Mine lasted about 8 weeks, and I was simply hungry every moment of the day. Yeah, that sucked. A lot. But it did go away.

Nausea - sometimes that can be hunger, but sometimes it can be due to intolerances, like dairy. Most of us are lactose intolerant until we've healed. The part of the villi that makes lactase is also the part that our gut attacks when we eat gluten. <_< But for most celiacs, this passes after you've healed, often around 6 months or so, I think?

Emma-Lee Rookie

When I went gluten free (3 weeks ago) I noticed the hunger right away. YES NORMAL. What I did was make sure I was packing myself plenty, I mean plenty of food for work. LOTS of snacks, I ate so much, but I didn't care because I hate being hungry and nauseous....3 weeks later I don't need as much. So I just recommend being accepting of yourself, and knowing that you need to eat more regularly and more often for a while. It was tough, but it takes time. Oh, and that gas can take months to clear. Your GI has to heal....it's been so frustrating for me, but I totally get yah....hang in there, it will pass.=)

AerinA Rookie

For me the nausea turned out to be low blood sugar. I think it was withdrawal/body in starvation mode/"ohmygodwhereismygluten." I think our bodies are trying to make us eat gluten because that's what you're used to and a lot of people do have some form of withdrawal. I was actually hungry all the time PRE-gluten free diet and had vitamin deficiencies, after a few weeks on the diet I'm eating a much more normal diet, by choice, rather than having to force myself to wait for the next meal. Things get better all the time. I'm sure they will for you, too.


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    • trents
      Well, the next step would logically be to commit in a serious way to the gluten-free diet and see if you have significant improvement in your symptoms. You should see improvement very soon with regard to GI issues and within weeks if there are other symptoms if gluten is indeed the issue. If there is significant improvement after going gluten free, that would tell you that you must avoid gluten and given the test results you already have, the logical conclusion is NCGS. As I said, an NCGS diagnosis is arrived at by first ruling out celiac disease, which seems to have been done. Then you could go back to that doctor with the other evidence component (improvement of symptoms with gluten-free eating) and ask if he/she would now be willing to declare an official dx of NCGS and give you a note. Or, you could book an appointment with another doctor who could look at your test results online, together with symptom improvement after going gluten-free, who might be more cooperative. I would seek out a younger practitioner as they are more likely to not be operating on outdated info about gluten disorders. By the way, NCGS is about 10x more common than celiac disease. 
    • Jason Hi
      Thank you for clarifying the terminology. Based on what my doctor told me, I understand that I do not have celiac disease, but that I’m “likely gluten sensitive.” From what I’ve researched, that places me in the category of Non-Celiac Gluten Sensitivity (NCGS)—as you mentioned, the key difference is that with NCGS there are no damaged villi and no positive celiac-specific antibodies. Either way, my treatment is the same: follow a gluten-free diet to avoid feeling sick. My understanding is that there are three main issues related to gluten: 1. Celiac Disease (produces specific antibodies and damages the small bowel) 2. Wheat Allergy (an immune response to wheat proteins) 3. Non-Celiac Gluten Sensitivity (negative celiac tests but still symptomatic from gluten) Regarding tax breaks or workplace accommodations, I came across a statement from celiac.org (https://celiac.org/gluten-free-living/federal-benefits/tax-deductions/) indicating that having any formal diagnosis—celiac disease or non-celiac gluten sensitivity—plus a prescription from a physician is typically required to qualify. In my case, my goal is to avoid feeling sick and secure documentation for both work and potential tax benefits. If I do pursue further tests or get more detailed lab results, I’ll share those here to confirm whether the doctor is suggesting celiac disease or truly NCGS. But as of now, the doctor’s comments lead me to believe I fall under NCGS.
    • trents
      Welcome to the forum, @Jason Hi! First, we need to deal with some squishy terminology. There are two terms which are, unfortunately, used interchangeably and indiscriminately to refer to two different gluten-related disorders. The two terms are "gluten sensitive" and "gluten intolerant". Because these terms are used carelessly we are not certain what you mean when you say your doctor told you that your are likely "gluten sensitive". The actual medical terms for these two gluten disorders are: "celiac disease" and "Non Celiac Gluten Sensitivity" or NCGS for short. The test you had run by the GI doc are intended to check for celiac disease. There is no test for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out.  Because these terms are used by many people interchangeably I'm not sure that your doctor, after running the tests, was intending for you to understand that he believes you have celiac disease or NCGS. So, to clear up the confusion, can you post the results of your blood test, not just the test scores but the reference ranges used by the lab analyzing the blood sample to determine negative/positive or normal/high? The difference between celiac disease and NCGS is that celiac disease damages the lining of the small bowel over time whereas NCGS does not. However, they may share many of the same gastro intestinal symptoms. Both need to be addressed with a gluten free diet but the tax breaks and work place accommodations you speak of would likely only accrue from an official celiac disease diagnosis. So, can you post the blood test results along with the reference ranges and also the endoscopy report. We can help you decipher whether or not the doc was suggesting you may have celiac disease or NCGS if you will do that.
    • Jason Hi
      I recently had an upper gastrointestinal endoscopy and blood tests, and my gastroenterologist concluded that I’m “likely gluten sensitive.” However, they wouldn’t provide a prescription or a formal doctor’s note—just a test result saying I’m likely gluten sensitive, along with the advice to avoid gluten. I’m frustrated because I know that proper documentation could help with tax breaks for gluten-free foods and even workplace accommodations. I’m also not willing to go through another gluten challenge—it was rough! Does anyone have recommendations for a doctor (U.S. based preferably Texas) who is more understanding and willing to provide the necessary documentation for gluten sensitivity? I’d really appreciate any suggestions!
    • ALBANICKAP
      Hi, I'm very frustrated with my problems related to the above.  I find Gluten to be easier than fructose, at times even lactose b/c I love cheese.  I do buy lactose free dairy products but still have problems.  Have recently been adding more bread to bulk up my stools.  Any suggestions for products that might help? Thx. AP  
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